Rural/Regional Families
Nurture Information Hub
Evidence
https://www.ruralhealth.org.au/15nrhc/sites/default/files/C4-1_Wakely.pdf
Luke Wakely and Kym Rae
Premature birth is the leading cause of disability worldwide. Infants born prematurely often require significant medical intervention and long-term multidisciplinary support in order to achieve their developmental potential. Parents of premature infants must adjust to parenting a fragile infant that may experience long-term complex health issues. The preterm birth and the complex needs of premature infants can have a substantial life-long impact on the nature of parenting and the relationship between the infant and their parents.
Rural communities in Australia generally experience higher rates of preterm birth compared with metropolitan areas. Yet, rural-based support services for families with premature infants are scarce and those services that do exist tend to be generalist in nature and might lack the specialised knowledge to meet the complex needs of these children. Thus, it is likely that families in rural areas must parent their premature infant without local support or travel vast distances to access specialist support.
Women’s experiences of antenatal transfer for threatened premature labour in NSW
Melanie Lewis, Lynette Passant, Helen Cooke, Daniel Challis
https://www.womenandbirth.org/article/S1871-5192(19)30421-4/pdf
Each year thousands of pregnant women experiencing threatened premature labour are transferred considerable distances across Australia to access higher level facilities but only a small proportion of these women go on to actually give birth to a premature baby. Women from regional areas are required to move away from their home, children and support networks because of a perceived risk of birthing in a centre without neonatal intensive care facilities.
Education
Living in a rural or regional area while having a premature or sick baby who has been admitted into a Neonatal Unit presents unique challenges. The distance from advanced medical facilities means that parents may need to travel long distances or even temporarily relocate to ensure their baby receives the necessary care. This separation from home can be particularly stressful.
Being hours away from your family during this time can add another layer of stress to your experience. It can be difficult on siblings, partners, and extended family, and especially on you. Your baby may need to spend time in a Neonatal Unit far from home due to specialists and facilities not being available in your local hospital, however babies in this case (particularly for families living in regional areas), will be attempted to be transferred to the family’s local Hospital once healthy and stable enough to do so.
In Australia, there are 24 Neonatal Intensive Care Units (NICU) and 100+ Special Care Nurseries (SCUs), with the majority of these being in metropolitan areas. Babies born sick or prematurely in a remote area need to be transported to the nearest NICU or SCU, possibly hundreds of kilometres away from their home, often using specialised transportation services like these:
NETS (Victoria) is the emergency transport service for newborn babies in the state of Victoria, parts of southern NSW and northern Tasmania. The base of operations and clinical coordination centre is a combined one incorporating PETS (Paediatric Emergency Transport Service) and PERS (Perinatal Emergency Referral Service) under the name 'PIPER'. All newborn patients needing intensive care in Victoria are transported to one of 4 neonatal ICUs by NETS (Victoria).
NETS (NSW) is the emergency transport service for babies (and children) for the state of NSW. Newly born patients are moved to one of 10 neonatal ICUs in NSW and the ACT.
NeoRESQ is the neonatal retrieval service that supports regional centres in central and southeast Queensland and northern New South Wales.
WA NETS operates in Western Australia, the service provides emergency transport of newborns in WA.
SAAS MedSTAR operates in South Australia. SAAS MedSTAR operates a 24/7 dedicated paediatric and neonatal service component (SAAS MedSTAR Kids).
NETS NT Services are embedded in the Neonatal ICUs and receive logistical support from CareFlight who provides a 24-hour aeromedical paediatric service on behalf of the Northern Territory Government.
If your baby is spending time in a hospital, hours away from home, the hospital will be able to provide support for available accommodation to allow you to be as close as possible to your baby.
Ronald McDonald Houses are located within footsteps of major women’s and children’s hospitals across Australia. Their Houses provide a homely and inviting place to stay for parents, guardians, carers and their siblings while their child is undergoing treatment in a nearby hospital.
Patient assisted travel schemes (PATS) are available in each state or territory to help rural and remote community members access necessary and approved medical specialist services that are not locally available.
- Northern Territory: Patient Assistance Travel Scheme
- Queensland: Patient Travel Subsidy Scheme
- South Australia: Patient Assistance Transport Scheme
- Tasmania: Patient Travel Assistance Scheme
- Western Australia: Patient Assisted Travel Scheme and Interstate Patient Travel Scheme
Empowerment
Relocating your family far from home, work, school, and your support network due to a child's premature birth or illness is extraordinarily challenging. However, it is crucial to remember that you are not alone.
If the distance from home adds stress, seek support. Hospital Social Workers are available to help navigate these challenges and connect you with resources to ease the burden. Additionally, Miracle Babies’ NurtureLine (1300 622 243) offers compassionate support and guidance during this trying time.
Useful Links
Preterm Alliance – Every Week Counts – Page 6
Australian Institute of Health and Welfare
Pregnancy Birth and Baby
https://www.pregnancybirthbaby.org.au/health-services-for-rural-families
Miracle Babies Foundation
https://www.miraclebabies.org.au/content/financial-assistance/gjsos0
ABC News
Rural and Remote Mental Health
Gidget Foundation
Confirmation Content
Disclaimer: This publication by Miracle Babies Foundation is intended solely for general education and assistance and it is it is not medical advice or a healthcare recommendation. It should not be used for the purpose of medical diagnosis or treatment for any individual condition. This publication has been developed by our Parent Advisory Team (all who are parents of premature and sick babies) and has been reviewed and approved by a Clinical Advisory Team. This publication is not a substitute for professional medical advice. Miracle Babies Foundation recommends that professional medical advice and services be sought out from a qualified healthcare provider familiar with your personal circumstances.To the extent permitted by law, Miracle Babies Foundation excludes and disclaims any liability of any kind (directly or indirectly arising) to any reader of this publication who acts or does not act in reliance wholly or partly on the content of this general publication. If you would like to provide any feedback on the information please email [email protected].
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